Access to diagnosis and treatment of Chagas disease in Japan: a qualitative analysis to propose strategic actions

Trypanosoma cruzi infection affects millions globally, including migrants in non-endemic countries. In Japan, home to over 280,000 Latin American migrants, access to diagnosis and treatment has been insufficiently studied. This study examines the actors, barriers, and facilitators shaping access to care for T. cruzi infection in Japan. Guided by Frost and Reich’s (2008) access framework, a qualitative study was conducted between 2018 and 2024 using semi-structured interviews, participant observation, and documentary analysis. Twenty-two cases of affected individuals were explored, along with interactions involving healthcare providers, research projects, non-profit organizations, and public institutions. Data were analyzed across four domains of access: architecture, availability, affordability, and adoption. Findings show that access to care relies heavily on fragmented informal networks of researchers, physicians, a patient association, and the World Health Organization rather than formal health system structures. Major barriers include the absence of a coordinated referral system, limited provider knowledge and experience, circuitous care pathways, lack of regulatory approval for diagnostic tests and medicines, and complex procedures for importing and using antiparasitic drugs. Additional psychosocial challenges, including language barriers, emotional distress, normalization, and financial concerns, further delayed care. Facilitators included social and family support, health insurance, and WHO’s antiparasitic drug supply. This study concludes that access to care for T. cruzi infection in Japan remains overly dependent on fragile personal networks and research infrastructure. To ensure more effective access, strategic actions should be taken to strengthen legal, regulatory, and institutional frameworks, and to formalize the patient association.